The Hashemite Kingdom of Ministry of Health

Non-Communicable Diseases Directorate

National Registry of End Stage Renal Disease

(ESRD)

Annual Report 2016

www.moh.gov.jo Tel: 5678197 Fax: 5656489 Jordan The Hashemite Kingdom of Jordan Ministry of Health

Non-Communicable Disease Directorate

National Registry of End Stage Renal Disease

(ESRD)

Annual Report 2016

Prepared by:

Dr. Salem Al-Qaisi Dr . Majed Asaad His Majesty King Abdullah II

List of the team who participated in producing this ESRD annual report:

Dr. Mohammad Salameh El-Lozi Senior Consultant in Internal Medicine, Nephrology and Transplantation. MRCP (UK). FRCP (London). FRCP (Glasgow), Private sector and P.H.H.

Dr. Khaled Ali Zayed Nephrologist, MOH.

Dr. Tayseer Saheb Family medicine consultant – MOH/NCD Directorate.

Dr. Kamal Hassan Arkoub Specialist in Community Medicine. MOH.

5 Foreword

It is my great pleasure to present to you the ninth report of the Jordan National End Stage Renal Disease Registry (ESRDR) for the year 2016.We hope that this report will assist health care providers, public health officers, NGOs in their work to prevent and control renal diseases in Jordan.

As a Minister of Health, I will assure that Jordan ESRD Registry will receive all the support that the ministry can offer. The annual report of the Jordan Renal Registry explores the trends and characteristics of (ESRD) in Jordan and clarifies many misconceptions, while providing informative and reliable data to help in policy building at a national level.

The data presented in this report constitutes an organized and systematic data of ESRD registry, it provides prevalence, incidence and burden of ESRD in Jordan, and it will provide readers with information on the epidemiology of ESRD in Jordan and its distribution by age groups, gender, and governorates. It also assists researchers, renal diseases experts, and policy makers in identifying priorities for developing national strategies and programs for renal diseases early detection as well as prevention programs.

I express my gratefulness and appreciation to everyone who helped in the preparation and dissemination of this report, and assures all of you that the Ministry of Health will continue to support National End Stage Renal Diseases Registry by all available resources to make its mission ongoing and of greatest benefit.

Minister of Health

Prof. Dr. Mahmoud Al-sheyyab

6 Acknowledgement

The National ESRD Registry operates under the umbrella of the Ministry of Health; however, it works in cooperation with a large number of hospitals from all health sectors, Nephrologists and Nurses working in dialysis units who provide the registry with valuable and vital data required for success.

We would like to thank all those who cooperate with us, report and facilitate our work, namely Nephrologists, Physicians, Nurses and staff of the Dialysis Units. The obvious support of focal points in all dialysis units is highly appreciated.

We would like to thank Mr. Haytham Shgairat and Mrs. Rasha Kokash for their effort in data entry of all ESRD Data to special designed software for the Registry.

Special thanks to our focal points-head of Renal unit in all governmental, private, military and university hospitals for the timely collection and submission of data to the registry.

The interaction between the Registry and the Jordan Society of Nephrolog y is very positive and greatly appreciated.

The dedicated hard work during the process of data collection and data entry of the staff in the registry is acknowledged.

We are very grateful to the Eastern Mediterranean Public Health Net Work (EMPHNET) for its support in preparing and publishing this report.

General Director PHC Director of NCD Directorate

Dr. Ayoub As-sayaideh Dr. Majed Assad

Head of National ESRD Registry

Dr. Salem Al-Qaisi

7 Name of Hospitals

Royal Medical Services Hospital Name Site Phone number

King Hussein Medical center 5804804

Prince Hashem Bin Al Hussein Zarqa’a 3962002

Prince Hashem Bin Abudullah Aqaba 2014111

Prince Ali Bin Al Hussein Karak 2386370

Prince Rashid bin Al Hassan Irbid 7100890

Prince Zeid bin Hussein T a fi e l a 2242982

Queen Rania Hospital Amman 5804804

Ministry of Health Hospital Name Site Phone number

Al-Basher Hospital Amman 4775111

Abu Obaida Hospital Irbid 026570018

Hussein Hospital Balqa 053551140

Karak Hospital Karak 032386190

Ruweished Hospital Mafraq 026292183

Maan Hospital Maan 032132222

Mafraq Hospital Mafraaq 026231234

Princess Iman Balqa 053584934

AL-Zarqa’a Hospital Zarqa 05398332

Jamel Altotnge Amman 4020096

Yarmouk Hospital Irbid 027585980

Princess Raya Irbid 026521666

G h o r S a fi H o s p i t a l Karak 032302436

Prince Hamza Hospital Amman 5053826

Queen Rania Al-Abdullah Maan 032150636

8 Ramtha Hospital Irbid 027384384

Iman Hospital / Ajloun Ajloun 026421914

Princess Salma Hospital Madaba 053207104

Jerash Hospital Jerash 026351114

Moaz bin Jabal Irbid 026587011

Princess Basma Teaching Irbid 027275555

Nadeem Hospital Madaba 053244008

AL-Shoneh AL-Janobyeh Balqa 053581364

Prince Hussein Balqa 5351731

Al-badeya Hospital Mafraq 026298040

Aqleh Hospital Amman 4642441

AL-Ahli Hospital Amman 5664164

AL-Dleel Hospital Zarqa 053825144

Roum-AlCatholic Hospital Irbid 027257900

AL Haya Hospital Amman 4391111

Prince Faisal Hospital Zarqa 053740251

Al-Qawasmi Hospital Irbid 027243401

Al-Najah Hospital Irbid 027100170

Al-Khansa’a Hospital Amman 4898893

University Hospitals Hospital Name Site phone number Jordan University Hospital Amman 5353666 King Abdullah University Irbid 027200600

Private Sector Hospitals Hospital Name Site Phone Number Islamic Hospital Amman 5101010 Jordan Hospital Amman 5608080 AL-Qouds Hospital Amman 4387181

9 Hospital Amman 5607431 Specialty Hospital Amman 5609609 Aljazeera Hospital Amman 5657581 Ibn al-Haytham Hospital Amman 5205555 Arab Medical Center Amman 5921199 Dr. Ahmed Hamayda Hospital Amman 4785555 AL Esteqlal Hospital Amman 5652600 Luzmila Hospital Amman 4624345 AL Isra Hospital Amman 5300300 Marka Islamic Amman 4893855 Palestine Hospital Amman 5607071 Philadelphia Hospital Amman 5854801 Tla Al Ali Hospital Amman 5339008 AL Hanan Hospital Amman 4750800 Amman Surgical Hospital Amman 4641261 Italian Hospital / Amman Amman 4777101 AL-Rasheid Hospital Amman 4777444 Dar AL-Salam Hospital Amman 5850008 Algardens Hospital Amman 5777111 Almaqased Hospital Amman 4377000 Jordanian Red Crescent Amman 4779131 Italian Hospital / Karak Karak 032355345 AL Mahaba Hospital Madaba 053245541 AL Hekma Hospital Zarqa 053990990 AL Razi Hospital Zarqa 053744167 Jabal Al-Zayton Hospital Zarqa 053655555 Qaser Al-Shibib Hospital Zarqa 053987995 Irbid Specialty Hospital Irbid 027103100 Ibin Al-Nafees Hospital Irbid 027102100 Al-Rahbat Al-Wardyeh Irbid 027102011 Islamic Irbid Hospital Irbid 027273111

10 Table of Contents

List of Abbreviations 12 List of tables 13 List of Figures 14

Part One: 16 Introduction 17 Geography 18 Population 18 Jordan Renal Registry 26 Methodology 30

Part Two: 32 Dialysis Units in Jordan- prevalence 32

Part Three: 34 ESRD Patients in Jordan 34 Trend of ESRD patients in Jordan during (2008-2016)

Part Four: 48 Incidence of ESRD Patients in Jordan 48

Part Five: 56 Pediatric ESRD 56

Part Six: 61 ESRD patients among Non-Jordanians 61

Part seven: 64 ESRD Mortality 64

References 67

11 List of Abbreviations

ESRD End Stage Renal Disease

MOH Ministry of Health

CDC Centers of Disease Control and Prevention

WHO World Health Organization

BRFSS Behavioral Risk Factors Surveillance System

NCD Noncommunicable Disease

PHH Prince Hamza Hospital

DOS Department of Statistics (Jordan)

OR Odds Ratios

BMI Body Mass Index

CI Confidence Interval

PS Private Sector

CKD Chronic Kidney Disease

GFR Glomerular Filtration Rate

RRT Renal Replacement Therapy

RMS Royal Medical Services

PPM Prevalence per Million Populations

ASIR Age Specific Incidence Rate

JCR Jordan Cancer Registry

IMR Infant Mortality Rate

AKI Acute Kidney Injury

SLE Systemic Lupus Erythematosus

12 List of tables

Table N. Description Page

Table (1) Estimated Population of Jordan 2016 20

Population distribution by Governorate and gender, Table (2) 21 Jordan2016 Selected Demographic, Socio-economic and Health Table (3) 22 Indicators 2016 Distribution of ESRD according to age groups, gender and Table (4) 38 Prevalence Rate per million (PPM), 2016 Distribution of ESRD patients according to marital status Tables (5) 40 and gender 2016 Distribution of ESRD patients by employment status and Table (6) 41 gender,2016 Distribution of ESRD patients by type of insurance and Table (7) 42 gender 2016 Distribution of ESRD patients by Governorate and prevalence Table (8) 43 per million populations (PPM)

Table (9) Distribution of primary causes of ESRD for the year 2016 44

Table (10) Prevalence of co-morbidity and some risk factors with ESRD 45

Table (11) Distribution of ESRD patients by fitness for transplantation 47

Table (12) Causes of unfitness for transplantation 48

Table (13) Priority level for patient candidate for transplant 49

Table (14) Prevalence of Hepatitis B and C in ESRD patients 50

Distribution and ASIR of ESRD cases by gender and age Table (15) 52 group Incidence 2016

Table (16) Primary causes of ESRD for the year 2016 - Incidence 55

Table(17) Causes of ESRD in Pediatric patients 2016 61

Distribution of mortality in ESRD patients by age group and Table (18) 66 gender Distribution of ESRD patients among Non-Jordanians Table (19) 69 according to age groups and gender, 2016

13 List of Figures

Figure N. Description Page

Figure (1) Map of the Hashemite Kingdom of Jordan 19

Figure (2) Population Pyramid – Jordan 2016 20

Figure (3) Distribution of dialysis units by health sector, Jordan 2016 32

Figure (4) Distribution of Dialysis Machines by Health Sector, 2016 33

Number of prevalent ESRD patients in Jordan during (2008- Figure (5) 35 2016) International comparison of prevalence rate of Hemodialysis Figure (6) 36 (PPM) 2016

Figure (7) Distribution of ESRD patients by gender 37

Figure (8) ESRD cases according to age groups and gender-2016 39

Figure (9) ) Distribution of ESRD cases by age group -2016 39

Distribution of prevalent ESRD patients by Health sec- Figure(10) 42 tor,2016

Figure (11) Distribution of ESRD patients according to Blood group 45

Figure (12) Distribution of ESRD patients by type of Dialysis 46

Distribution of Hemodialysis patients by number of sessions Figure(13) 47 /week

Figure(14) Causes of unfitness for transplantation 48

Distribution of fitness of ESRD patients by Priority level for Figure(15) 49 Transplantation

Figure(16) Distribution of ESRD patients by availability of a donor 50

Figure(17) Incidence of ESRD Jordanian by gender & age group-2016 53

Figure(18) Distribution of ESRD patients by health sector, 2016 53

Figure(19) Distribution of ESRD patients by gender, 2016 54

14 Figure(20) Distribution of ESRD patients by Nationality 2016 56

Figure(21) Distribution of ESRD patients by type of Dialysis, 2016 56

Figure(22) Distribution of ESRD patients by fitness for transplantation 57

Distribution of fitness of ESRD patients by Priority level for Figure(23) 58 transplantation 2016

Figure(24) Distribution of mortality in ESRD patients 2016 58

Figures(25) Distribution of ESRD pediatric patients by gender 59

Distribution of Pediatric patients according to type of Dialy- Figure (26) 60 sis Distribution of pediatric patients according to age groups Figure (27) 62 and gender 2016

Figure (28) Distribution of Pediatric ESRD by fitness for transplantation 62

Figure (29) Distribution of mortality in Pediatric patients 63

Figure (30) Distribution of mortality in ESRD patients 64

Distribution of mortality in ESRD patients according to gen- Figure (31) 65 der Distribution of mortality in ESRD patients by age group and Figure (32) 65 gender

Figure (33) Distribution of ESRD patients by Nationality 67

Distribution of ESRD patients among Non-Jordanians by Figure (34) 68 gender Distribution of ESRD patients among Non-Jordanians ac- Figure (35) 69 cording to age groups and gender, 2016

15 Part one

Introduction

Geography

Population

Health Status

Jordan Renal Registry

Methodology

16 Part One

Introduction ESRD remains one of the leading causes of morbidity and mortality in Jordan. As life expectancy increases in Jordan, the proportion of elderly population is expected to increase; this will lead to higher prevalence of non-communicable diseases including renal diseases that may lead eventually to ESRD, although chronic kidney disease sometimes results from primary diseases of the kidneys themselves, diabetes and hypertension remained the major causes of ESRD.

Chronic kidney disease could not be prevented in most circumstances, but screening and control of chronic diseases mainly diabetes mellitus and hypertension will decrease the occurrence of renal complications of these diseases with resulting reduction of ESRD.

In the ESRD Registry we are collecting all data relevant for ESRD patients and create a data base for the problem in Jordan, this enables us to determine the incidence, prevalence, epidemiologic characteristics of patients including age, sex, governorate; it also enables us to determine mortality and burden of the disease in our country. The Registry provides researchers and scientists with data that help in conducting further research on ESRD, and present important data, figures and statistics for decision makers for the process of planning and implementing preventive programs for ESRD.

With great pleasure we present our 9th annual ESRD report, including prevalence and the incidence of ESRD in Jordan for the year 2016, reviewing the ongoing changes in the ESRD Registry, using the data to give direction to renal-control planning and programs in the fields of prevention, screening, treatment, and to monitor and evaluate the impact of these programs. This report will help understand the ESRD incidence in Jordan and thus will enhance prevention and control efforts of the National Renal Registry Program.

The team involved in producing this report had made great efforts to present the graphics and tables in a clear, very concise and user-friendly way hopping this will facilitate their utilization and comprehension.

17 Geography

Jordan is located in the Middle East, between Latitudes 29-33 north and between Longitudes 35-39 east, extending about 500 Kilometers from North to South, it is bounded in the North by Syria, East by Iraq and Saudi Arabia, South also by Saudi Arabia and West by Palestine Authority. The total surface area is 89318 Km2. Out of the total area, 75% is desert along the Eastern part of the country. Mountains height ranged between 1100 – 1854 meters above sea level. The Dead Sea area is the lowest area in the world and it is around 416 meter below sea level.

The climate of the country as a whole is moderate, there are four seasons. The temperature ranged from 0°C in winter to 38°C in summer. Jordan is divided into three regions (Middle, Northern and Southern) and twelve governorates.

Population

The population of Jordan is 9798000(Jordanians 6797000 million (3461000 males and 3336000 females), male: female ratio 1: 1.04 according to the estimated census of 2016. (Department of Statistics Jordan, 2016). About 11.4% of the population under the age of 5 years, 34.3% under the age of 15 years and 61.9% of the population at the age 15-64 years, only 3.6 % of the total population above the age of 65 (Sex Ratio in 2016: 1: 1.04)males for females). Table (1) and figure (2) show the age distribution of Jordan population, 2015 (Jordanian Population Pyramid ).Table (2) shows the population distribution of Jordanians by governorates and gender, which is used to calculate incidence rates for different regions. Jordan divided into three regions: each region consists of four governorates. The Central region (Amman, Balqaa, Zarqa, and Madaba) constitutes about 61% of the total population with population density of (249.7) person per Km2. North region includes (Irbid, Mafraq, Jarash, Ajloun) which constitute 29.6% of the population with a population density of (55) person per Km2. South region includes (Karak, Tafila, Ma’an, Aqaba) which constitutes 9.5% 2 of the population with a population density of 11.7 per km .

18 Figure (1) Map of the Hashemite Kingdom of Jordan

19 Table (1) Population of Jordan 2016

Gender Male Female Total

N % N % N % Age -Group 0-4 394831 11.4 376033 11.3 770864 11.3 5-9 426912 12.3 407914 12.2 834826 12.3 10-14 380656 11.0 358883 10.8 739539 10.9 15-19 362672 10.5 338913 10.2 701585 10.3 20-24 346416 10.0 317095 9.5 663511 9.8 25-29 277227 8.0 260948 7.8 538175 7.9 30-34 238425 6.9 241723 7.2 480148 7.1 35-39 219249 6.3 222314 6.7 441563 6.5 40-44 199112 5.8 201816 6.0 400928 5.9 45-49 176688 5.1 174905 5.2 351593 5.2 50-54 134485 3.9 133513 4.0 267998 3.9 55-59 93988 2.7 94824 2.8 188812 2.8 60-64 66486 1.9 65221 2.0 131707 1.9 65+ 143853 4.2 141898 4.3 285751 4.2 total 3461000 100.0 3336000 100.0 6797000 100.0

Figure (2) Population Pyramid – Jordan 2016

20 Table (2) Population distribution by Governorate and Gender, Jordan, 2016 Gender Male Female Total

Governorate N % N % N % Amman 1331548 38.5 1294241 38.8 2625789 38.6

Balqaa 206643 6.0 201266 6.0 407909 6.0

Zarqa 486255 14.0 463005 13.9 949260 14.0

Madaba 82204 2.4 78950 2.4 161154 2.4

Central Region 2106650 60.9 2037462 61.1 4144112 61.0

Irbid 691474 20.0 661647 19.8 1353121 19.9

Mafraq 165350 4.8 157519 4.7 322869 4.8

Jarash 88436 2.6 83980 2.5 172416 2.5

Ajloun 82256 2.4 79265 2.4 161521 2.4

North Region 1027516 29.7 982411 29.4 2009927 29.6

Karak 141108 4.1 138918 4.2 280026 4.1

Tafileh 47282 1.4 45342 1.4 92624 1.4

Maan 66982 1.9 64551 1.9 131533 1.9

Aqaba 71462 2.1 67316 2.0 138778 2.0

South Region 326834 9.4 316127 9.5 642961 9.5

Total 3461000 100.0 3336000 100.0 6797000 100.0

21 Table (3) Selected Demographic, Socio-economic and Health Indicators 2016 Indicators 2016 Population 2016 6797000 Population Density (Person per km2) 75.2 Population Growth Rate 2.4 % Rate of Natural Increase 2.1% Population Doubling Time (Year) 28 Population Less Than 15 Year of Age 34.3% Percentage of Population Age 15-64 Years 62.0% Percentage of Population Age 65+ 3.7 Dependency Ratio 61.4 Percentage of Urban Population 90.3% Percentage of Rural Population 3.9% Total Fertility Rate (Women 15-49 Years) 3.38 Urban 3.4 Rural 3.9 Sex Ratio 112.5 Total Households (000) 2032.8 Crude Marriage Rate (Per 1000 Population) 8.3 Crude Divorce Rate (Per 1000 Population) 2.2 Singulate Mean Age at First Marriage (Year) 29.3 Male 31.3 Female 26.9 Jordanian Married of Total Population 15+ 55.5 Male 54.8 Female 56.2 Average Household Size (person) 4.8 Population Median Age (year) 22.4 Crude Birth Rate (Per 1000 Population) 22.6 Crude Death Rate (Per 1000 Population) 6.0 Infant Mortality Rate (Per 1000 Live Births) 17.0 Under Five Mortality Rate (Per 1000 Live B 19.0 Life Expectancy at Birth (Year) 73.5 Male 72.8 Female 74.2 Unemployment Rate (%) 15.3 Male 13.3 Female 24.1

22 Health Status

Morbidity Data Jordan is witnessing an epidemiologic transition, which is characterized by rapid decline in mortality from infectious diseases coupled with an increase of non- communicable diseases (NCDs). Unhealthy diet, Physical inactivity, obesity and smoking are major determinants of NCDs and represent major risk factors for the development of cardiovascular diseases, cancer and diabetes. According to epidemiologic surveys / Behavioral Risk Factors Surveillance survey (BRFSS) which have been conducted by Ministry of Health over the last few years; 2002, 2004 and 2007 among those aged 18 years and above revealed that determinants and levels of risk factors for NCDs are rising.

The Behavioral Risk Factor Surveillance Survey, 2007 showed the following: - Diabetes represent major health problems; reported to affect more than 16% of adults, impaired glucose tolerance (IGT) was found in an additional 24%, bringing the total prevalence of glucose tolerance abnormalities to over 40 % for 18 years and above. - The prevalence rate of hypertension was 25.6 %. - The prevalence rate of hypercholesterolemia was 36 %. - The prevalence rate of HDL-C (low level) was 33.8 %. - The prevalence rate of high LDL-C was 24.2 %. - The prevalence rate of high Triglyceride was 48.8 %. - The prevalence of overweight was 30.5%, (BMI 25-29.9 Kg/m2) and the prevalence of obesity was 35.9 %,( BMI 30 Kg/m2 and more). - Smoking is a major problem, with more than 49.6% of adult men and 5.7% of women smoking regularly. The last 18th annual report for the year 2013, JCR registered 8744 cancer cases, of these 5416 (61.9%) were among Jordanians and 3328 (38%) were among non-Jordanians.

The crude incidence rate of all cancers among Jordanians was 82.9 per 100,000 populations (76.2 for males and 90.1 for females). The male to female ratio was 0.9: 1.

23 Mortality data It provides information on annual death rates of a population. It also provides information on specific diseases in terms of clinical and public health perspectives. Major achievements have been made during the last several decades. The Infant Mortality Rate (IMR) fell from 135 in 1960 to 15 deaths per 1,000 live births in 2015. This impressive decline occurred as a result of focused maternal and child health activities, increased vaccination coverage rates, improvements in education, birth spacing, sanitation and access to safe drinking water and improvement of general conditions.

By law, all deaths must be registered in Jordan. However, registration is not universal and death certification by cause is not completely accurate. According to Jordan Mortality Data in 2014, cardiovascular diseases accounted for about 38.39 % of deaths for both sexes. Cancer was the second leading cause of death accounting for 16.49 % of total deaths, while external causes of mortality were the third leading cause responsible for 9.46 % of total deaths.

While diseases of Genitourinary system constitute about 3.5% total deaths, 544 patients (90%)of these deaths were due to renal failure (acute and chronic renal failure) according to mortality report in 2014 is (5).

24 When it is right, no one remembers. But when it fails, all have to remember”

It is described as a small- sized, light-weighted, bean- shaped but a smart organ. Some consider it as the secretary of the body as it deals with each inbox and outbox in the body. Its dysfunction may affect the functions of other organs and systems. It may be affected by dysfunctions of other organs and systems. When it fails, whether acutely or chronically, this may manifest as multiple signs and symptoms relating to multiple systems in the body. So the patient of kidney failure is considered as all patients in one. As a consequence, the Nephrologists must also be all physicians in one.

In the past Stewart Cameron said,” for those who have chosen a career in Nephrology there can be no better basic moto than to strive to be a person with some technical skill, a broad spectrum of scientific knowledge, and with those personal characteristics of warmth and humanity that serve to cement the science of medicine to the art of medicine.

Kidneys are the first and so far the only organs whose function can be replaced by a machine. Kidney Failure can be acute, called Acute Kidney Injury (AKI) or chronic, called Chronic Kidney Disease (CKD).

When patients of Chronic Kidney Disease (CKD) have reached stage 4 CKD i.e. Glomerular Filtration Rate (GFR) < 30 ml /min / 1.73 m2, ideally they are under a Nephrologists’ care. Stage 5 CKD i.e. GFR is < 15ml/min /1.73 m2, is called dialysis stage. Renal Replacement Therapy “RRT” means of dialysis and transplantation.

Worldwide, the machine of dialysis had served millions of ESRD patients.

25 Jordan Renal Registry

Historical development of Nephrology and dialysis 1840-Pierre Priory defined uremia. 1861-Thomas Graham coined the term dialysis for the first time. 1913- John Abel invented first dialysis apparatus, first animal dialysis was done. 1928 –George Has –first human dialysis was done. 1943-Dr.Willem Kolff introduced Kolff rotating drum dialyzers. 1948-Waters and Beall –first successful human dialysis. 1950- Introduction of dialysis into clinical practice.

The subsequent successful development of a technique to create an adequate arterio-venous fistula in 1972 permitted the rapid growth of dialysis programs. Equipment has been developed to faster home-care hemodialysis and chronic ambulatory peritoneal dialysis.

Technical advances in hemodialysis followed the use of bicarbonate dialysate, more biocompatible membranes, membranes of higher porosity and ultra filtration.

The numbers of patients reaching to ESRD continue to increase annually, and this situation is leading to challenge to the existing system of RRT.

Causes of ESRD are multiple; the most common ones are diabetes mellitus and hypertension. Unless some form of RRT is available, ESRD is eventually fatal. Mortality in patient with ESRD is high.

However, the cost of RRT represents a great social burden, due to the evolving health care environment, growing elderly population, renewing and innovating healthcare technologies, increasing expectations of the population and the dilemma of economic constraints. There should always be a balance between the three key factors of a health care system: access to healthcare, quality of health care and the cost.

26 In conclusion, ESRD is a growing disease all over the world, it is caused by many etiologies, diagnosed by physicians, and must be cared by the Nephrologists. New awareness programs of the disease must be established, and new strategies toward the burden of it must be started. It needs global collaboration and teamwork schedule.

Status of “Renal Replacement Therapy” in Jordan Proudly speaking, Jordan is one of the first countries in the Middle East that early started programs of dialysis and kidney transplantation. There are many renal dialysis units all over the country, belonging to Ministry of Health, Royal Medical Services, University hospitals and Private Sector. In addition, there are many kidney transplant centers in all sectors dealing with the best medical care.

Jordan has approved to be one of the pioneer countries in Nephrology and its modalities. Jordan achieved many in the field of nephrology like: 1968- the first dialysis was done at the Military Hospital “the Main Hospital” in – Amman.

- The first dialysis machine used in Jordan was”TRAVENOL” machine type. - The first kidney transplantation done in Jordan was on 18/05/1972 at the same main Military Hospital. It was the first to be done in the Middle East. 1981- The establishment of renal dialysis unit at Jordan university Hospital. The machine type was REDY “Sorbs system”. It was portable, moving to Khaldi and Islamic Hospitals.

1982- The first renal dialysis Unit was established in private sector, it was at Al- Khaldi Hospital.

1984- The first kidney transplantation was done in private sector at Islamic Hospital, then at Al- Khaldi Hospital.

2009- The first kidney transplantation in Jordanian public hospital was done at Prince Hamza Hospital in October 2009 according to The Jordanian National Program Of Renal Transplantation of the JMOH.

27 So dialysis was introduced in Jordan in 1968. Ever since, there has been a continuous expansion of the dialysis centers in terms of the geographic coverage and capacity. The economic prosperity helped building the services all over the country.

Modern hemodialysis machines were installed in the vast majority of units, which allowed for the performance of bicarbonate dialysis, controlled ultra filtration, and sodium profile modeling. Also a wider choice of biocompatible dialyzers has become available during the last few years.

Recently, there has been an emerging concern about the projection of the increasing number of patients on dialysis and the future cost. Therefore, close observation of the development of dialysis has been a demand of the Jordan center for organ transplantation. Preparing annual reports about all the modalities of RRT has become a demand activity.

National ESRD Registry, which is based on center and patient forms, is a useful tool to assess the quality of dialysis services and activities used to improve the adequacy of hemodialysis.

Jordan has had a growing number of persons developing CKD leading to ESRD. It is important to have a national registry in order to define the cause of ESRD, and to be able to perform International comparisons in renal epidemiology.

Such a registry will monitor the causes, incidence, and prevalence of ESRD and any emerging trend.

A national ESRD registry will allow the determination of the burden of disease as well as planning and policy formulation in the health care sector. As the Registry develops, data will become available for patients with ESRD, as is reported here.

Finally, it is a great achievement to establish the National ESRD Registry, a new achievement in renal events in Jordan.

28 National Registry of End Stage Renal Disease: The National Registry of End Stage Renal Disease was created in May 3rd, 2007 under the jurisdiction of the Ministry of Health by the order of his Excellency the Minister of Health.

Objectives of the National Registry of End Stage Renal Disease: • Establish a national database system about patients of ESRD. • Determine the burden of that disease, on country basis. • Determine governmental payment on dialysis. • Provide data about patients and their suitability to be transplanted, on a basis of priority. • Stimulate beginning studies and researches about ESRD. • Improve facilities of diagnosis and treatment for ESRD patients. Moreover, train dialysis technicians and national registry employees.

Action plan of National Registry of End Stage Renal Disease: * Prepare special form for the notification of ESRD from all hospitals and updated annually (annex1). * Training workshops for all focal point working in dialysis units about how to fill this form and how and when to send it to the national registry through either passive or active method of surveillance. * Good Communication with all dialysis units in the hospitals from all sectors to complete and improve documentation in this form. * Collection of all data about ESRD patients and all renal dialysis units in Jordan, through filling the prepared forms by dialysis technicians and attending Nephrologists. * Enter data about those patients and dialysis units into a computerized software program. * Analysis of the data, reporting the results and then delivering it to specialized people to stratify and build special schedules about the of ESRD.

29 Methodology: The National Registry of End Stage Renal Disease was created in 2007 and supported by the Ministry of Health. It is a database-system that collects data and information about almost all patients undergoing Renal Replacement Therapy (RRT), i.e. either dialysis (hemodialysis and peritoneal dialysis) or Kidney transplantation.

This is the eighth national ESRD Registry report. Data were received from all (78) dialysis units in Jordan. It is assumed that those undergoing treatment in these units are represent the number of all ESRD cases , because all cases are treated on the expense of the government and even the patients undergoing home peritoneal dialysis.

Data about ESRD patients who are receiving long term (RRT) during 2016 were collected from all dialysis units in the hospitals and then analyzed using special software statistical analysis( SPSS).

Two questionnaires (forms) used for data collection from hospitals. The first one is for the dialysis units: including number of beds, type of insurance of patient, nationality (Annex1).

The second form is for the patients, this form consist of demographic data, clinical data, source of treating facility, follow up and vital status of the patients and all these data will entered on special software for ESRD patients (Annex2). Patients who are not on Renal Replacement Therapy (RRT) and those who only received urgent dialysis or died shortly afterwards (less than 90 days) were not included in this report.

30 Method of Data Collection: Data was collected from all renal dialysis units in Jordan, through the following methods: two types of data collection methods were applied: 1- Passive Data Collection: in this system forms filled by dialysis units technicians and send to national renal registry - MOH/NCDs Directorate. 2- Active Data Collection: In this system the head of Renal Registry Unit visited the dialysis units and fills the forms on the unit and complete all the variables from medical record of those patients. This to ensure more complete and accurate data All forms were reviewed at the Renal Registry Unit and filtered and checked for any duplication and also document follow up data if the patient still alive or dead cause of death dates of last dialysis.

Data entered to special software designed for data of renal patients, Data analysis was done by using statistical package for the social sciences SPSS version 17.0.

Incidence and prevalence calculations in this report are based on the the population by Department of Statistics (DOS) 2016.

31 Part Two

Dialysis Units in Jordan By the end of 2016, there were 78 working Dialysis Units distributed all over the country. 37 units (47.4%) administered by Ministry of Health (MOH), 8 units (10.3 %) administered by Royal Medical Services (RMS), 2 units (2.6%) administered by university hospitals: one administered by Jordan University Hospital, one by King Abdullah University Hospital (KAUH) and 31 units (39.7%) administered by Private Sector (PS),(Figure 3).

Figure (3) Distribution of dialysis units by health sector, Jordan 2016

32 Distribution of Dialysis Machines by Health Sector, Jordan 2016. The total number of dialysis machines (933) in all units was distributed as followed: 436 (46.7%) machines in MOH units, 84(9.0%) machines in RMS, 34(3.6%) machines in universities hospitals and 379 (40.6%) machines in private sector hospitals, (Figure 4).

Figure (4) Distribution of Dialysis Machines by Health Sector, 2016

The focal points in all 78 Dialysis Units filled the special form of data collection and send it to National ESRD Registry located in the Ministry of Health. (Annex1), data about ESRD patients was received from all hospitals.

33 Part three

ESRD patients in Jordan Prevalence of ESRD patients in Jordan (2016)

The total numbers of patients treated and registered in the Jordan Renal Registry by the end of 2016 was 5352 patients; of them 5130 were Jordanians (95.9 % ) and 222 were non Jordanians (4.1% ).

This part of the report only include Jordanian patient –prevalence 2016 The number of Jordanian patients that registered in ESRD and treated in hospitals for the year 2016 was 5130 patients, while the number of new cases of ESRD for the year 2016 was 829 patients , out of them 797 patients (96.1%) were Jordanians,32 (3.9%) were non Jordanians).

The number for the last two years decreased for Jordanian due to kidney transplant done for the patients about (380) Jordanian patients did kidney transplant in our hospitals in Jordan for the years from (2011-2014), also after excluding the number of deaths for each year from 2008-2014 as shown in the figure below.

For this year we improve surveillance system for ESRD patients from 2008- 2016 from all ESRD units in all governorates we did both active and passive surveillance for vital status for those patients from civil registration data and if the patients were alive or dead.

34 Figure (5) Number of prevalent ESRD and deaths patients in Jordan during (2008-2016)

International comparison of prevalence rate of Hemodialysis ESRD patients

Figure (6) shows the International comparison of prevalence rate of Hemodialysis patients Per Million Population (PMP) in Jordan and other countries in 2016. The overall Prevalence Per Million Populations in Jordan in 2016 is (754.74/1,000,000) compared with other countries.

35 Figure (6): International comparison of prevalence rate of Hemodialysis (PPM) 2016

Prevalence of ESRD Patients in Jordan, 2016 The total number of ESRD patients during the year 2016 was 5130 patients who are receiving hemodialysis or peritoneal dialysis in the hospitals from all sectors.

1.Socio demographic characteristics of ESRD prevalent patients: Figure (7) shows the distribution of ESRD prevalent patients who attended renal dialysis units in all Jordanian hospitals during the year 2016 according to gender. The number of patients treated in the Dialysis Units was 5130 patients , out of them 3076 were male patients which accounted (60.0%) and 2054 were female patients accounted ( 40.0% ),with male to female ratio 1.49:1.

36 Figure (7) Distribution of ESRD patients by Gender

Distribution of ESRD patients according to age groups and gender, 2016

Table (4) shows the distribution of ESRD patients according to the age groups and gender, the mean age of patients was (53) years, (52.8 years for males and 53.4 years for females). The median age of patients was (55) years, (55 years for males and 55.5 years for females). Table (4) also shows the distribution of ESRD cases by prevalence rate per million populations (PPM), the overall prevalence per Million Populations in Jordan was (754.74/1,000,000).

37 Table (4) Distribution of ESRD according to age groups, gender and Prevalence Rate per million (PPM), 2016

Gender Gender Total

Age-Group Male PPM Female PPM N PPM

0-4 7 18.62 10 26.59 17 22.05

5-9 23 56.38 18 44.13 41 49.11

10-14 29 80.81 39 108.67 68 91.95

15-19 68 200.64 38 112.12 106 151.09

20-24 87 274.37 79 249.14 166 250.18

25-29 140 536.51 89 341.06 229 425.51

30-34 155 641.23 106 438.52 261 543.58

35-39 191 859.15 101 454.31 292 661.29

40-44 226 1119.83 137 678.84 363 905.40

45-49 268 1532.26 151 863.33 419 1191.72

50-54 342 2561.55 190 1423.08 532 1985.09

55-59 349 3680.50 195 2056.44 544 2881.17

60-64 362 5550.36 238 3649.13 600 4555.57

65 and above 829 5842.22 663 4672.37 1492 5221.33

total 3076 922.06 2054 615.71 5130 754.74

*PPM: Prevalence Per Million Populations

38 Figure (8) ESRD cases according to age groups and gender-2016

Figure (9) Distribution of ESRD cases by gender and age group -2016

39 Distribution of ESRD patients according to marital status and gender

Table (5) shows that the majority of ESRD patients were married (73.5%), (males 80.0% and females 58.7%), while (16.3%) of the ESRD patients were singles (males 13.8% and females 19.2%), (4.9%) of the patients were divorced.

Tables (5) Distribution of ESRD patients according to marital status and gender 2016

Gender Male Female Total

Marital Status N % N % N %

Married 2486 80.8 1206 58.7 3773 73.5

Single 425 13.8 395 19.2 834 16.3

Widow 78 2.5 289 14.1 370 7.2

Divorced 87 2.8 164 8.0 254 4.9

Total 3076 100.0 2054 100.0 5130 100.0

Distribution of ESRD patients according to employment status and gender Table (6) shows the distribution of the ESRD patients according to their employment status for both genders. House wife’s accounted (85.0 %) of the females, (4.8%) of the patients were employed either governmental or non- governmentally and military services (1.2), (18.7%) were retired, and (4.9%) were students, (18.7%) of the patients were unemployed, missing data about employment was (8.4%).

40 Table (6) Distribution of ESRD patients by employment status and gender, 2016

Gender Male Female Total

Job N % N % N %

House Wife 0 0.0 1745 85.0 1745 34.0

Private 518 16.8 41 2.0 576 11.2

Employed 185 6.0 56 2.7 247 4.8

Student 213 6.9 34 1.7 254 4.9

Unemployed 906 29.5 22 1.1 957 18.7

Military 53 1.7 5 0.2 60 1.2

Retired 906 29.5 26 1.3 961 18.7

Missing 295 9.6 125 6.1 430 8.4

Total 3076 100.0 2054 100.0 5130 100.0

Distribution of prevalent ESRD patients by health sector

Out of the all 5130 prevalent ESRD patients 2249 patients (43.8% ) were treated in MOH Dialysis Units , 994 patients (19.4%) treated in RMS Dialysis Units, 143 patients (2.8%) treated in university hospital Dialysis Unit, and 1644 patients (32.0%) treated in Private Sector Dialysis Units.(Figure 10)

41 Figure (10) Distribution of prevalent ESRD patients by Health Sector, 2016

Distribution of ESRD cases according to the type of insurance

Table (7) shows the distribution of ESRD patients according to insurance type. (97%) of patients were insured by one of the various types of health insurance. (34.7%) of the pa- tients were insured by Kidney Patients Fund in health insurance directorate in Ministry of health. Only (3.04%) were not covered by any type of insurance.

Table (7) Distribution of ESRD patients by type of insurance and gender 2016

Gender Male Female Total

Insurance Type N % N % N %

Kidney Patient 1076 34.98 701 34.13 1777 34.64

Civillian 882 28.67 598 29.11 1480 28.85

Military 935 30.40 621 30.23 1556 30.33

University 53 1.72 52 2.53 105 2.05

Private 35 1.14 21 1.02 56 1.09

No Insurance 95 3.09 61 2.97 156 3.04

Total 3076 100.00 2054 100.00 5130 100.00

42 Distribution of ESRD patients by Governorate The overall prevalence per Million Population in Jordan is (754.71,000,000/), the highest prevalence was found in (888.91,000,000/) followed by Balgaa governorate (845.81,000,000/) Madaba governorate (837.71,000,000/) Tafeila governorate (831.31,000,000/) Jarash governorate (817.81,000,000/) and Zarka governorate (724.81,000,000/).

Table (8) Distribution of ESRD patients by Governorate and preva- lence per million populations (PPM)

Male Female Total Governorate Gender N % N % N % Rate

Amman 1457 47.4 877 42.7 2334 45.5 888.9 Balqaa 195 6.3 150 7.3 345 6.7 845.8 Zarqa 399 13.0 289 14.1 688 13.4 724.8 Madaba 75 2.4 60 2.9 135 2.6 837.7 Central Region 2126 69.1 1376 67.0 3502 68.3 845.1 Irbid 489 15.9 348 16.9 837 16.3 618.6 Mafraq 79 2.6 60 2.9 139 2.7 430.5 Jarash 78 2.5 63 3.1 141 2.7 817.8 Ajloun 59 1.9 46 2.2 105 2.0 650.1 North Region 705 22.9 517 25.2 1222 23.8 608.0 Karak 112 3.6 79 3.8 191 3.7 682.1 Tafileh 46 1.5 31 1.5 77 1.5 831.3 Maan 47 1.5 23 1.1 70 1.4 532.2 Aqaba 40 1.3 28 1.4 68 1.3 490.0 South Region 245 8.0 161 7.8 406 7.9 631.5 Total 3076 100.0 2054 100.0 5130 100.0 754.7

* PPM: Prevalence per Million Populations Number of total cases in Jordan has received from renal dialysis units are 5130

Distribution of ESRD prevalent patients by primary cause

Table (9) shows the main primary causes of ESRD: The most common primary cause is Diabetes Mellitus (30.4%), followed by Hypertension (26.8%), Diabetes Mellitus and Hypertension (24.8%), Glomerulonephritis (7.6%) and then Polycystic kidney disease (2.3%) congenital causes (2.1 %), Infection (1.8%).

43 Table (9) Distribution of primary causes of ESRD for the year 2016

Male Female Total

Primary Causes Of ESRD N % N % N %

Diabetes Mellitus 953 31.0 609 29.6 1562 30.4

Hypertention 821 26.7 552 26.9 1373 26.8 Both diabetes & hypertension 790 25.7 481 23.4 1271 24.8

Glomerulonephritis 222 7.2 170 8.3 392 7.6

Polycystickidney 71 2.3 45 2.2 116 2.3 Congenital 59 1.9 47 2.3 106 2.1

Infection 49 1.6 44 2.1 93 1.8

Vesico Uretric Reflux 22 0.7 21 1.0 43 0.8

SLE 9 0.3 29 1.4 38 0.7 Drugs 18 0.6 11 0.5 29 0.6

Others 62 2.0 45 2.2 107 2.1

Total 3076 100.0 2054 100.0 5130 100.0

Co-morbidity and some risk factors with ESRD

The data showed the presence of other medical conditions coexisting with the ESRD condition itself. The prevalence of co-morbidity in ESRD patients showed that (61.5%) of patients were hypertensive, while cardiovascular diseases were found in (14.7%) of ESRD patients. The prevalence of diabetes constitutes (42.3 %). The prevalence of smoking in ESRD was (9.0%) and (4.4 %) of the patients had family history of renal diseases, Table (10).

44 Table (10) Prevalence of co-morbidity and some risk factors with ESRD 2016

Co-morbidity Frequency % Hypertention 2886 61.5 Diabetes Mellitus 1982 42.3

Both diabetes & hypertension 1626 34.7

Cardiac Disease 691 14.7 Smoking 423 9.0 Urinary Disease 295 6.3 Family History 205 4.4 Malignancy 52 1.1 Others 286 6.1

Distribution of ESRD patients according to Blood Group

Figure (11) shows that approximately one third of the patients 1954 (38.1%) were blood group O and 1413 (27.5%) were blood group A, 822 (16.0%), were blood group B and 521(10.2%) were blood group AB .Data was not available for 420 ESRD patients which constitutes (8.2%), of the ESRD patients.

Figure (11) Distribution of ESRD patients according to Blood group

45 Distribution of ESRD patients according to type of Dialysis Figure (12) shows that only 82 patients (2%) were treated by peritoneal dialysis, while 5048 patients (98%) were treated by hemodialysis.

Figure (12) Distribution of ESRD patients by type of Dialysis

Distribution of Hemodialysis patients by number of sessions / week

Figure (13) shows that 3603 patients (71.4%) underwent Hemodialysis thrice a week1284 (25.4%) twice a week, 69 (1.4%) once a week, and 92 (1.8%) four times a week, the average duration of the every session is almost four hours. 5048 patients are in hemodialysis*

46 Figure (13) Distribution of Hemodialysis patients by number of sessions /week

Distribution of ESRD cases according to fitness for transplantation

Table (11) shows that 2167 (42.2%) from both genders were considered candidates for transplantation, and 2139 not candidates for transplantation (41.7%), no available data on 824 (16.1%) of ESRD patients.

Table (11) Distribution of ESRD patients by fitness for transplantation

Gender Male Female Total

Gandidate For Transplant N % N % N %

Yes 1359 44.2 808 39.3 2167 42.2

No 1225 39.8 914 44.5 2139 41.7

Unknown 492 16.0 332 16.2 824 16.1

Total 3076 100.0 2054 100.0 5130 100.0

47 Distribution of ESRD cases according to unfitness for transplantation

Table (12) and Figure (14) show that the main causes of unfitness for transplantation were as followed: age 958 patients (44.8%), medical causes 819 patients (38.3%) of all cases, malignancies in 47 patients (2.2%), while unknown causes for the cases were 147 patients (6.9%) of all patients.

Table (12) Causes of unfitness for transplantation

Cause Frequency %

Age 958 44.8

Medical cause 819 38.3

Malignancy 47 2.2

Other Causes 168 7.9

Missed 147 6.9

Total 2139 100.0

Figure (14) Causes of unfitness for transplantation

48 Distribution of fitness of ESRD patients by priority level for transplantation

Figure (15) and Table (13) show the priority level for transplantation for patients who are candidate for transplantation,: that 913 patients (42.1%) were considered of high priority level for transplantation and 697 patients (32.2%) considered of medium and 348 patients (16.1%) of low priority and 209 (9.6%) had no data about their priority level.

Figure (15) Distribution of fitness of ESRD patients by Priority level for Transplantation

Table (13) Priority level for ESRD patient candidate for transplant-2016

Gender Male Female Total

Rriorety Level N % N % N %

High 546 40.2 367 45.4 913 42.1 Medium 448 33.0 249 30.8 697 32.2 Low 224 16.5 124 15.3 348 16.1 Unknown 141 10.4 68 8.4 209 9.6 Total 1359 100.0 808 100.0 2167 100.0

49 Distribution of ESRD cases according to availability of a donor

Figure (16) shows that 1535 patients (70.8%) had no available donor, and 536 patients (24.7%) had available donor, 96 patients (4.4%) had no data about available donor, this reflects the burden of ESRD in Jordan.

Figure (16) Distribution of ESRD patients by availability of a donor

Prevalence of Hepatitis B and C in prevalent ESRD patients Table (14) shows the prevalence of hepatitis B and C in ESRD patients. (1.2 %) of the cases had Hepatitis B and (7.8 %) had Hepatitis C.

Table (14) Prevalence of Hepatitis B and C in ESRD patients Type Of Hepatitis Hepatits B Hepatitis C

Male Female Total Male Female Total Gender N N N % N N N % Positive 39 22 61 1.2 205 197 402 7.8 Negative 2923 1960 4883 95.2 2785 1777 4562 88.9 Missed 114 72 186 3.6 86 80 166 3.2 Total 3076 2054 5130 100.0 3076 2054 5130 100.0

50 Part Four

Incidence of ESRD Patients

The total number of patients who treated in the dialysis units by the end of 2016 were (5130) patients, but the number of new cases for the year 2016 was 829 patients; of them 797 were Jordanians(96.1%) and 32 were non Jordanians (3.9%).

This part of the report only include Jordanian patient – incidence 2016, The number of new cases of ESRD Jordanian patients for the year 2016 was 797 patient.

Incidence of ESRD, 2016

Table (15) and Figure (17) show the distribution of ESRD incident patients in 2016 according to the age group and gender, with a mean age of 53.8 years, and median age of 56 years. Table (14) also shows the distribution of ESRD patients by Age-Specific Incidence Rate per million (ASIR). The overall Incidence per Million Populations in Jordan was (117.3/1,000,000).

51 Table (15) Distribution and ASIR of ESRD cases by gender and age group - Incidence 2016 Gender Total Age-Group Male Female N ASIR N ASIR N ASIR % 0-4 1 0.3 4 1.2 5 6.5 0.6 5-9 6 1.7 6 1.8 12 1.8 1.5 10-14 4 1.2 7 2.1 11 1.6 1.4 15-19 7 2.0 6 1.8 13 1.9 1.6 20-24 9 2.6 8 2.4 17 2.5 2.1 25-29 18 5.2 9 2.7 27 4.0 3.4 30-34 20 5.8 10 3.0 30 4.4 3.8 35-39 25 7.2 12 3.6 37 5.4 4.6 40-44 35 10.1 19 5.7 54 7.9 6.8 45-49 45 13.0 20 6.0 65 9.6 8.2 50-54 59 17.0 31 9.3 90 13.2 11.3 55-59 55 15.9 34 10.2 89 13.1 11.2 60-64 65 18.8 45 13.5 110 16.2 13.8 65+ 134 38.7 103 30.9 237 34.9 29.7 Total 483 139.6 314 94.1 797 117.3 100.0

*ASIR per Million population

52 Figure (17) Incidence of ESRD Jordanian by Gender & age group-2016

Distribution of incident ESRD patients by health sector

Figure (18) shows that the new number of patients treated in the Dialysis Units in 2016 were 797 patients; 321 patients (40.3%) treated in MOH Dialysis Units, 228 patients (28.6%) treated in RMS Dialysis Units, 29 patients (3.6%) treated in university hospital Dialysis Unit, and 219 patients (27.5 %) treated in Private Sector Dialysis Units.

Figure (18) Distribution of ESRD patients by health sector, 2016

53 Distribution of ESRD incident patients by gender

In the years 2016, out of the total (797) new cases of ESRD, 483 patients (60.6%) were males and 314 patients (39.4%) were females with male to female ratio1.66:1 Figure (19)

Figure (19) Distribution of ESRD patients by gender, 2016

Distribution of ESRD Incident patients by primary cause

Table (16) shows the main primary causes of ESRD Incident patients: The most common primary cause was Hypertension (30.7%), followed by Diabetes Mellitus (30.4%), Diabetes Mellitus and Hypertension (25.7%), Infection (2.9%) Glomerulonephritis (2.4%) and then congenital causes (2.1 %) Polycystic kidney disease (1.9%), Vesico uretric reflux (0.9%), SLE (0.6%) , Drug (0.4%), and others was (2.0%) of the patient.

54 Table (16) Primary causes of ESRD for the year 2016- Incidence

Male Female Total Causes N % N % N %

Hypertension only 160 33.1 85 27.1 245 30.7

Diabetes Mellitis 141 29.2 101 32.2 242 30.4

DM and Hypertension 123 25.5 82 26.1 205 25.7

Infection 11 2.3 12 3.8 23 2.9

Glomerulonephritis 11 2.3 8 2.5 19 2.4

Congenital 10 2.1 7 2.2 17 2.1

Polycystic kidney 8 1.7 7 2.2 15 1.9

Vesico Uretric Reflux 5 1.0 2 0.6 7 0.9

SLE 1 0.2 4 1.3 5 0.6

Drugs 1 0.2 2 0.6 3 0.4

Others 12 2.5 4 1.3 16 2.0

Total 483 100.0 314 100.0 797 100.0

Distribution of ESRD patients by Nationality

Figure (20) shows the distribution of ESRD patients according to Nationality, in 2016 there were (32) non-Jordanian patients accounted (3.9%) and 797 Jordanian patients accounted (96.1%).

* SLE - Systemic Lupus erythematosus

55 Figures (20) Distribution of ESRD patients by Nationality 2016

Distribution of ESRD patients according to type of Dialysis

Figure (21) shows that in 2016, only 24 patients (3.0%) were treated by peritoneal dialysis, while 773 patients (97.0%) were treated by hemodialysis.

Figure (21) Distribution of ESRD patients by type of Dialysis, 2016

56 Distribution of ESRD cases according to fitness for transplantation, 2016.

Figure (22) shows that there were 446 (56.0%) candidates for transplantation, and 351 not candidates for transplantation (44.0%).

Figure (22) Distribution of ESRD patients by fitness for transplantation

Distribution of fitness of ESRD patients by Priority level for transplantation

Figure (23) shows the priority level for transplantation: in 2016 it was found that 186 patients (23.3%) were of high priority level for transplant, 357 patients (44.8%) of medium and 254 patients (31.9%) of low propriety level.

57 Figure (23) Distribution of fitness of ESRD patients by Priority level for Transplantation 2016

Distribution of mortality among ESRD patients

In the year 2016 a total of 54 ESRD patients (6.8 %) died during this year, 18 of them were females and 36 were males of different age group Figure (24).

Figure (24) Distribution of mortality in ESRD patients 2016

58 Part Five:

Pediatric ESRD The total number of pediatric patients from 0-14 years was 126 patients in 2016.

Figure (25) shows the distribution of Pediatric ESRD who treated in renal dialysis units in all hospitals during the year 2016 according to gender. There were 126 patients, out of them 59 were males (47%) and 67 were female patients accounted (53%).

Figure (25) Distribution of ESRD pediatric patients by Gender

59 Distribution of Pediatric patients according to type of Dialysis

The total number of pediatric patients from 0-14 years was 126 patients. Out of them 105 patients were treated by hemodialysis and 21 on peritoneal dialysis. Figure (26) shows distribution of pediatric patients according to type of dialysis.

Figure (26) Distribution of Pediatric patients according to type of Dialysis

Causes of ESRD in Pediatric patients

Table (17) shows that the primary cause of ESRD in pediatric patients (those below 14 years): the commonest causes of ESRD Vesicouretic reflux (16.7%) Congenital renal anomalies and Neurogenic bladder (15.1%) followed by Glomerulonephritis (14.3%), Hypertension (9.5%), Nephrotic syndrome, Diabetes mellitus (5.6%) Oxalosis and Infection (4.0%) SLE (3.2%), Drug (1.6%) while other causes were not determined in (5.6%) of the pediatric patients.

60 Table (17) Causes of ESRD in Pediatric patients 2016

Gender Male Female Total Primary Cuase Gender Primary Cuase N % N % N % Vesicouretic reflux 10 16.9 11 16.4 21 16.7 Congenital 6 10.2 13 19.4 19 15.1 Neurogenic bladder 7 11.9 12 17.9 19 15.1 Glomerulonephritis 8 13.6 10 14.9 18 14.3 Hypertension 7 11.9 5 7.5 12 9.5 Nephrotic syndrom 5 8.5 2 3.0 7 5.6 Diabetes mellitus 4 6.8 3 4.5 7 5.6 Oxalosis 3 5.1 2 3.0 5 4.0 Infection 4 6.8 1 1.5 5 4.0 SLE 0 0.0 4 6.0 4 3.2 Drug 1 1.7 1 1.5 2 1.6 Unknown 4 6.8 3 4.5 7 5.6 Total 59 100.0 67 100.0 126 100.0

Pediatric ESRD patients according to age groups and gender, 2016

Figure (27) shows the distribution of pediatric patients according to the age groups and gender in 2016, which indicates that the highest occurrence of the cases was among the age group (10-14) years 68 (54.0 %) for both genders, with a mean age of 9.61 years and median 10.00.

61 Figure (27) Distribution of pediatric patients according to age groups and gender 2016

Distribution of Pediatric ESRD according to fitness for transplantation Figure (28) shows that there were 79 (62.7%) candidates fit for transplantation, and 43 not fit for transplantation (34.1%) missed data was 4 (3.2%).

Figure (28) Distribution of Pediatric ESRD by fitness for transplantation

62 Mortality data in Pediatric patients

A total of 11(9.7%) pediatric patients in dialysis renal units died during the year 2016 out of 115 (91.3%) who were at risk. Figure (29)

Figure (29) Distribution of mortality in Pediatric patients

63 Part Six

ESRD Mortality Distribution of mortality among ESRD patients

Figures (30-32) and table (18) show the distribution of deaths for ESRD patients, 380 patients out of 5130 were died during the year 2016. 235 (61.8%) of them were males, and 145 (38.2%) were females. Median age at death was 64 years, (63 years for males and 66 years for females).

Figure (30) Distribution of mortality in ESRD patients

64 Figure (31) Distribution of mortality in ESRD patients according to gender

Figure (32) Distribution of mortality in ESRD patients by age group and gender

65 Table (18) Distribution of mortality in ESRD patients by age group and gender

Gender Male Female Total % Age-Group

0-4 1 0 1 0.3

5-9 2 1 3 0.8

10-14 2 1 3 0.8

15-19 2 2 4 1.1

20-24 3 2 5 1.3

25-29 2 2 4 1.1

30-34 3 4 7 1.8

35-39 10 5 15 3.9

40-44 8 4 12 3.2

45-49 21 7 28 7.4

50-54 29 18 47 12.4

60-64 26 16 42 11.1

65+ 108 69 177 46.6

Total 235 145 380 100.0

66 Part Seven:

ESRD patients among Non-Jordanians, 2016 Distribution of ESRD patients by Nationality

Figure (33) shows the distribution of ESRD patients according to Nationality, The total number of patients among Non-Jordanians was (222) 21 patients out of 245 were died during the year 2015 accounting for (4.1%) of all patients reported to Jordan Renal Registry 2016 , and (4690) patients among Jordanians accounting for (95.9%) of all patients.

Figure (33) Distribution of ESRD patients by Nationality

Distribution of ESRD patients among Non-Jordanians by Gender

Figure (34) shows the distribution of Non-Jordanians ESRD patients who treated in renal dialysis units in all Jordanian hospitals during the year 2016 according to gender, the number of patients treated in the Dialysis Units were 222 patients, there were 137 male patients who accounted (61.7%) and 85 female patients accounted (38.3%).

67 Figure (34) Distribution of ESRD patients among Non- Jordanians by gender

ESRD patients among Non-Jordanians according to age groups Table (18) Figure (35) shows the distribution of Non-Jordanians patients according to the age groups and gender, which indicates that the highest occurrence of the cases was among the age group (60-69) years for both genders, followed by age-group (50-59) years for both genders .Mean age of the patients was 53 years, while median age of the patients was 56 years (55 years for males and 57 years for females).

68 Table (18) Distribution of ESRD patients among Non- Jordanians according to age groups and gender, 2016

Gender Male Female Total % Age-Group

0-9 2 0 2 0.9

10-19 7 2 9 4.1

20-29 8 8 16 7.2

30-39 11 10 21 9.5

40-49 23 11 34 15.3

50-59 25 16 41 18.5

60-69 35 24 59 26.6

70+ 26 14 40 18.0

Total 137 85 222 100.0

Figure (35) Distribution of ESRD patients among Non- Jordanians according to age groups and gender, 2016

69 References

1- Annual Report, Jordan, 2016. Department of Statistics (DOS) 2- BRFSS Survey, 2007 Ministry of Health (MOH) Jordan. 3- Cancer incidence in Jordan, MOH, 2014. 4- Global Youth Tobacco Survey, Anti-Smoking Society Association, Jordan, 5- Mortality Data in Jordan, 2014, information and mortality section annual report 2014-Ministry of Health, Jordan.

70

المملكة األردنية الهاشمية وزارة الصحة مديرية األمراض غير السارية السجل الوطني لمرضى الفشل الكلوي استمارة معلومات حول وحدات الديلزة الكلوية

1- التاريخ

2- اسم المستشفى

3-العنوان

4- رقم الهاتف 5- الفرعي

6-ضابط االرتباط 7- رقم الهاتف

8-الطبيب المعالج 9- رقم الهاتف واختصاصه

10-عدد األجهزة 11-عادي 12-عزل 13-احتياط 14-معطل 15-المجموع موزعة كالتالي

16-عدد الورديات العاملة 18- تامين 19-بطاقة 20-صندوق 22-غير صحي غير مرضى 21-عسكريين 23-المجموع 17-عدد المرضى ذلك األردنيين موزعين مدني قادر الكلى كالتالي

25-الجنسية 27- المجموع 24-عدد المرضى غير األردنيين 26-العدد

28-المجموع الكلي للمرضى في الوحدة

29- مالحظات:

8 اﻟﻣﻣﻠﻛﺔ اﻷردﻧﯾﺔ اﻟﮭﺎﺷﻣﯾﺔ وزارة اﻟﺻﺣﺔ/ﻣدﯾرﯾﺔ اﻷﻣراض ﻏﯾر اﻟﺳﺎرﯾﺔ اﻟﺴﺠﻞ اﻟﻮطﻨﻲ ﻟﻤﺮﺿﻰ اﻟﻔﺸﻞ اﻟﻜﻠﻮي/ اﺳﺘﻤﺎرة اﻟﻤﺮﯾﺾ وﺣﺪة اﻟﺪﯾﻠﺰة/ ﻣﺴﺘﺸﻔﻰ ......

1- اﻟﺮﻗﻢ اﻟﻮطﻨﻲ اﻟﺮﻗﻢ اﻟﻤﺘﺴﻠﺴﻞ

2- اﺳﻢ اﻟﻤﺮﯾﺾ: اﻷب اﻟﺠﺪ اﻟﻌﺎﺋﻠﺔ

3- ﺗﺎرﯾﺦ اﻟﻤﯿﻼد: ا اﻟﻌﻤﺮ ﯾﻮم ﺷﮭﺮ ﺳﻨﺔ 4- اﻟﺠﻨﺲ : 1. ذﻛﺮ  2 . أﻧﺜﻰ  5- اﻟﻤﮭﻨﺔ: 6- اﻟﺤﺎﻟﺔ اﻻﺟﺘﻤﺎﻋﯿﺔ : 1- ﻣﺘﺰوج  2- أﻋﺰب  3- ﻣﻄﻠﻖ  4- أرﻣﻞ 

7- اﻟﺠﻨﺴﯿﺔ : 1- أردﻧﻲ 2- ﻏﯿﺮ أردﻧﻲ  أذﻛﺮ اﻟﺠﻨﺴﯿﺔ : ...... 8- ﻧﻮع اﻟﺘﺄﻣﯿﻦ اﻟﺼﺤﻲ : ﺣﻜﻮﻣﻲ  ﻋﺴﻜﺮي  ﺻﻨﺪوق اﻟﻜﻠﻰ  ﺟﺎﻣﻌﻲ  ﺧﺎص  اﺧﺮى .... 9- اﻟﻌﻨﻮان اﻟﺪاﺋﻢ : اﻟﻤﺪﯾﻨﺔ اﻟﺤﻲ اﻟﺸﺎرع

اﻟﻤﺤﺎﻓﻈﺔ

رﻗﻢ اﻟﮭﺎﺗﻒ : اﻟﻤﻨﺰل اﻟﺨﻠﻮي:

10. Blood Group: 1- A  2- B  3- AB  4- O 

11. Primary Cause of Renal failure: 1-DM  2- HTN  3-Glomerulonephritis  4. Polycystic Kidney 

5-Congenital  6- Infection  7- Drugs induced nephropathy  8- Vesico uretric reflux (VUR) 

9-SLE  10- Unknown  11- Others Specify …………………………..

12. Dialysis Type:  Per itoneal  Hemodialysis If Hemo, sessions per week…………….

13. Date of diagnosis (YEAR ): ...... 14. Starting Date of Dialysis: ….. .../…. /……

14. Place of Dialysis Unit (Hospital):…… ……………………………….. 15. Past Medical History: 1-Uncontrolled BP  5- Malignancy  2-Diabetes Mellitus  6-Familial Renal Diseases  3-Cardiac Diseases  7-Smoking  4-Urinary Tract Diseases  8-Others Specify………………..

7 1/2 16. Is the patient candidate for Kidney Transplantation? Yes  No  (Confirmed by the attending Nephrologist / Physician) if yes answer the following question :

17. Priority Level : 1- High  2- Medium  3- Low 

18. Available related donor 1- Yes  2- No  if yes ,what is his relation to the patient :

…………………………………..

19. If not Candidate, Determine Why:………………………………………………………………………

20. Dose the patient do Kidney transplant before 1- Yes  2- No  if Yes When ……………………..

21. Hematology :

Date Hb HCT WBC Platelets

22. Laboratory Test for the patient ?

A-. Virology before starting Dialysis:

Date Hepatitis B Hepatitis C HIV Other test

B-. Virology after starting Dialysis :

Date Hepatitis B Hepatitis C HIV Other test

Name Of Abstractor:………………………………………....

Signature: ……………………………………………………...

Date of Abstract: / /

6 2/2

اﻟﻣﻣﻠﻛﺔ اﻷردﻧﯾﺔ اﻟﮭﺎﺷﻣﯾﺔ وزارة اﻟﺻﺣﺔ ﻣدﯾرﯾﺔ اﻷﻣراض ﻏﯾر اﻟﺳﺎرﯾﺔ اﻟﺳﺟل اﻟوطﻧﻲ ﻟﻣرﺿﻰ اﻟﻔﺷل اﻟﻛﻠوي ﻧﻣوذج اﻹﺑﻼغ ﻋن اﻟوﻓﯾﺎت

وﺣﺪة اﻟﺪﯾﻠﺰة/ ﻣﺴﺘﺸﻔﻰ ...... ------

1- اﻟرﻗم اﻟوطﻧﻲ: 2- اﻻﺳم: اﻷول اﻷب اﻟﺟد اﻟﻌﺎﺋﻠﺔ ...... 3- اﻟﺟﻧس: ذﻛر...... أﻧﺛﻰ...... 4- اﻟﺟﻧﺳﯾﺔ:...... 5- اﻟﻌﻣر: ...... 6- اﺳم اﻟﻣﺳﺗﺷﻔﻰ (وﺣدة اﻟدﯾﻠزة اﻟﻛﻠوﯾﺔ):...... 7- ﺗﺎرﯾﺦ ﺑداﯾﺔ اﻟدﯾﻠزة :...... 8- ﺗﺎرﯾﺦ اﻟوﻓﺎة:...... 9- ﻣﻛﺎن اﻟوﻓﺎة: وﺣدة اﻟدﯾﻠزة اﻟﻛﻠوﯾﺔ .... ﻣﺳﺗﺷﻔﻰ...... اﻟﻣﻧزل...... إذا ﻛﺎن ﻏﯾر ذﻟك ﺣدد...... 10- ﺳﺑب اﻟوﻓﺎة: - اﻟﺳﺑب اﻟﻣﺑﺎﺷر ﻟﻠوﻓﺎة:......

ﻣﻼﺣظﺎت:......

اﻟﺗﺎرﯾﺦ ...... اﻻﺳم واﻟﺗوﻗﯾﻊ ......

5 توزيع مرضى الفشل الكلوي حسب التامين الصحي فهو كالتالي: 1480 )28.85%( مريض لديهم تامين صحي مدني 1777 )34.64%( مريض لديهم إعفاء من صندوق مرضى الكلى 1556 )30.33%( مريض لديهم تامين عسكري 105 )2.05%( مريض لديهم تامين جامعات 56 )1.09%( مريض لديهم تأمين خاص )شركات( 156 )2.97%( بدون تأمين وتأمينات أخرى وغير معروف

وحدات غسيل الكلى يوجد في األردن 78 وحدة غسيل كلى موزعة كالتالي: 37 )47.4 %( وحدة لدى مستشفيات القطاع الحكومي 31 )39.7 %( وحدة لدى مستشفيات القطاع الخاص 8 )10.3 %( وحدات لدى مستشفيات الخدمات الطبية الملكية 2 )2.97 %( وحدة لدى المستشفيات الجامعية

أجهزة غسيل الكلى: يوجد في األردن 933 جهاز غسيل كلى موزعة كالتالي: 436 )46.7 %( جهاز لدى مستشفيات القطاع الحكومي 379 )40.6 %( جهاز لدى مستشفيات القطاع الخاص 84 )9.0 %( جهاز لدى مستشفيات الخدمات الطبية الملكية 34 )3.6 %( جهاز لدى المستشفيات الجامعية

حيثيبلغ نسبة انتشار مرضى الفشل الكلوي لكل مليون نسمة في األردن )754.7/ 1،000،000(، وهو أعلى نسبة في محافظة عمان )888.9 / 1،000،000( يليها محافظة البلقاء )845.8/ 1،000،0( ،محافظة مادبا )837.7/ 1،000،000( و محافظة الطفيلة )831.3 / 1،000،000(.

4 السجل الوطني لمرضى الفشل الكلوي

لقد جاء تأسيس السجل الوطني لمرضى الفشل الكلوي في المملكة األردنية الهاشمية بقرار من معالي وزير الصحة بتاريخ 3/5/2007 , وقد صدر أول تقرير سنوي للفشل الكلوي عام 2008.

ويهدف السجل الوطني لمرضى الفشل الكلوي إلى توفير قاعدة بيانات ديموغرافية وعلمية حول حجم مشكلة الفشل الكلوي في المملكة من حيث أعداد المرضى والتوزيع الجغرافي، والتوزيع حسب الفئات العمرية والجنس، باإلضافة إلى متوسط عدد مرات الغسيل، مما يساعد على تحديد حجم اإلنفاق الحكومي على عمليات غسيل الكلى وكلفة العالج باألدوية، وأهمية إيجاد البدائل وكلفتها. كما توفر قاعدة البيانات معلومات مرجعية ، تبين أهلية هؤالء المرضى لغايات زراعة الكلى بحيث تتسم هذه القاعدة المعلوماتية بسهولة الوصول والمصداقية والموثوقية، وترتيب أولويات المرضى اللذين يحتاجون لزراعة الكلى مما يسهل عملية الوصول للحاالت المتبرعة بالكلى من المتوفين دماغيا. كما سيقوم السجل بتعميم المعلومات التي سيتم جمعها على شركاء وطنيين لالستفادة منها وخاصة للدفاع المدني.

بلغ العدد اإلجمالي لمرضى الفشل الكلوي األردنيين 5130 مريض حتى نهاية عام 2016، منهم 3076 من الذكور بنسبة )60%( و2054 من اإلناث بنسبة (40%) ، باإلضافة إلى 222 غير أردني من مختلف الجنسيات, ويعد مرض السكري والضغط من األسباب الرئيسية للفشل الكلوي حيث يشكل مرض السكري نسبة )30.4%( والضغط نسبة )%26.8(. ويسجل ما بين 750إلى 800 حاالت جديدة لألردنيين سنويا تقريبا، حيث يتم جمع الحاالت من جميع وحدات الديلزة الكلوية في األردن عن طريق الرصد النشط والذاتي . وقد سجل 797 حالة جديدة لألردنيين في عام 2016, منها 743 حالة أحياء

عدد مرضى الفشل الكلوي حسب القطاعات الصحية

2249 )43.8%( مريض لدى مستشفيات القطاع الحكومي 1644 )32.0%( مريض لدى مستشفيات القطاع الخاص 994 )19.4%( مريض لدى مستشفيات الخدمات الطبية الملكية 143 )2.8%( مريض لدى المستشفيات الجامعي

3 المملكة األردنية الهاشـمية وزارة الصحة مديرية األمراض غير السارية

السجل الوطني لمرضى الفشل الكلوي

وبائية الفشل الكلوي في األردن لعام 2016

إعداد الدكتور سالم القيسي الدكتور ماجد اسعد المملكة اﻻردنية الهاشـمية وزارة الصحة

مديرية األمراض غير السارية

السجل الوطني لمرضى الفشل الكلوي

وبائية الفشل الكلوي في األردن لعام 2016 التقرير السنوي التاسﻊ